For parents who tube-feed their children, life often happens in isolation. The stares and whispers from onlookers and the practical challenges of tube-feeding in a public space mean that many families retreat from social activities in favour of staying at home.
Now, a UTS-partnered research program called SUCCEED is preparing to open the door to new opportunities for these families.
Working closely with Sydney Children’s Hospitals Network and Sydney Children’s Hospitals Foundation, the SUCCEED team are developing and trialling resources designed to make cafés tube-feeding friendly.
“We know that cafés are often difficult environments for families with children who tube-feed because of the practical and social considerations that come with tube-feeding in public,” says UTS education researcher and SUCCEED co-founder Professor Nick Hopwood.
“Our aim is to create a concept for a café that’s both functional and welcoming for these families and that can be replicated at multiple sites in the future.”
Research that builds community
SUCCEED brings together families, healthcare professionals and universities to deliver ground-breaking research for children with complex feeding difficulties, including those who tube-feed.
The aim is to address gaps in the information and social supports that are available to families, as well as to enhance clinical care.
One of the group’s first outputs was childfeeding.org, a website for parents and health professionals who care for children with feeding difficulties.
The site draws together evidence-based information, tips and personal stories that emerged from interviews with families, combining research evidence with powerful lived experience.
The website has been hugely popular among the tube-feeding community — since its launch in 2017, it has had 36,000 views from over 15,000 visitors.
A social media campaign in 2021 took content from the website to a wider audience, generating over 1.4 million impressions and reaching 278,000 people.
“I don’t know anywhere else in the world where you can get that combination of curated information that parents wish they’d been told and a place where parents can tell their stories on their own terms,” says Professor Hopwood, who led the family interviews.
Overcoming stigma
Increasing awareness and reducing stigma around tube-feeding is key to the SUCCEED remit. To this end, the research team has embarked on a range of promotional and fundraising activities over the last four years.
In 2019, the SUCCEED team hosted Australia’s first annual tube-feeding picnic, which took place in Sydney. With more than 100 attendees, the picnic played an important role in building community among tube-feeding families. Another tube-feeding picnic will be held in April this year.
That's all I needed – someone to talk to who knew and understood exactly what life is like.
- Anna Ierardo, parent and SUCEED co-founder
Elsewhere, SUCCEED members have spread their message in forums including the Nourishing Matters to Chew On podcast, the Topsy Turvy — Where to Next? podcast and the 2022 VIVID Ideas Panel, and spearheaded a UTS-supported community fundraising campaign to deliver important messaging around how the public can support and include families with children who tube-feed.
And the future looks bright: a 2022 Sydney Children’s Hospitals Foundation event raised $30,000 that will go towards developing a new training program that will increase the number of trusted adults in a child’s life who can help them tube-feed.
2023 will also be the year that SUCCEED evolves from an informal group of volunteers into a national not-for-profit organisation. This move will enable further expansion of the group’s life-changing work and its underlying message: that tube feeding is a life-affirming activity that shouldn’t be forced behind closed doors.
“Children who tube-feed are also happy, resilient, fun-loving and courageous,” says Dr Chris Elliot, a staff specialist paediatrician at St George Hospital and the Sydney Children’s Hospital Randwick and one of the co-founders of SUCCEED.
“Feeding via a tube doesn't have to be a barrier to living a wild, creative, joyful life.”
Research team
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Professor, UTS, Professional Learning -
Associate Professor, Western Sydney University, School of Business -
Lecturer, University of South Australia, Speech Pathology -
General and Developmental Paediatrician -
Anna IerardoSUCCEED
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Jessica GowansSUCCEED
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Kate Disher-QuillSUCCEED
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Anjana RegmiSUCCEED
